NPR

'Henrietta Lacks': A Donor's Immortal Legacy

A fluorescence micrograph of HeLa cells, derived from cervical cancer cells taken from Henrietta Lacks and named in her honor (Getty Images)

In 1951, an African-American woman named Henrietta Lacks was diagnosed with terminal cervical cancer. She was treated at Johns Hopkins University, where a doctor named George Gey snipped cells from her cervix without telling her. Gey discovered that Lacks' cells could not only be kept alive, but would also grow indefinitely.

For the past 60 years Lacks' cells have been cultured and used in experiments ranging from determining the long-term effects of radiation to testing the live polio vaccine. Her cells were commercialized and have generated millions of dollars in profit for the medical researchers who patented her tissue.

Lacks' family, however, didn't know the cell cultures existed until more than 20 years after her death. Medical writer Rebecca Skloot examines the legacy of Lacks' contribution to science — and effect that has had on her family — in her new book, The Immortal Life of Henrietta Lacks.

Skloot is a freelance science writer and a contributing editor at Popular Science. She has written feature stories for The New York Times, Discover Magazine, and RadioLab.

Copyright 2014 NPR. To see more, visit http://www.npr.org/.

Transcript

TERRY GROSS, host:

This is FRESH AIR. I'm Terry Gross.

Our interview today is about science, ethics, class and race. One of the obstacles that used to face medical researchers was the difficulty of finding human cells that would keep multiplying in the culture of a Petri dish. That problem was solved in 1951, when one doctor took cells from the cervix of a poor African-American woman who was dying of cervical cancer.

Her cells were unique. They multiplied and multiplied and have been used in tens of thousands of research studies. They were essential in developing the Salk polio vaccine, as well as drugs for treating herpes, leukemia, influenza and Parkinson's disease. They even went up in the first space missions so scientists could study the impact of zero gravity on human cells.

This line of immortal cells that have contributed so much to science is called HeLa cells, named after Henrietta Lacks, the woman from whom the original cells were taken without her knowledge. The He in HeLa is for Henrietta; the La is for Lacks.

It took 25 years for her family to find out about HeLa cells. Her daughter Deborah wondered: If our mother's cells have done so much for medicine, how come her family can't afford to see doctors?

My guest, science journalist Rebecca Skloot, has written a new book about this amazing story called "The Immortal Life of Henrietta Lacks."

Rebecca Skloot, welcome to FRESH AIR. What makes Henrietta Lacks' cells, the HeLa cells, so special, so different from other cells?

Ms.�REBECCA SKLOOT (Author, "The Immortal Life of Henrietta Lacks"): It's sort of a mystery, in a sense. There are a few things we know for sure about them. I mean, one of them is that they were first immortal human cell line ever to grow in culture.

Scientists put them in culture in 1951, and they just never died. They kept growing and growing and growing. And scientists had been trying to do that for decades, and it had never worked.

She had when she went to the hospital, she had a tumor on her cervix that was about the size of a dime. And within six months, nearly ever organ in her body was taken over by tumors. So her cancer grew incredibly fast in her body.

When scientists put them in culture, they just took off. They doubled every 24 hours, and they sort of piled on top of each other and grew in these enormous sort of quantities that no cells had never done before.

GROSS: So the cells that the doctors took that have reproduced so much and have been used in so much research, those were her cancerous cells that they took?

Ms.�SKLOOT: Yes. Yeah, they took both. They took a small sample of her tumor without her knowing, and they took a small sample of her normal tissue. And this was part of a larger study. So to sort of put it into historic context, in 1951, when she went to the hospital, the Pap smear had just recently been invented. Very large numbers of women were dying of cervical cancer. And the Pap smear had reduced those numbers a bit, but no one really knew exactly how to diagnose cervical cancer yet.

So doctors would do a Pap smear, and sometimes they would look at it and say, oh, that's just, it's a bacterial infection, and they'd give a woman antibiotics when she actually had cancer. Other times, they'd look at it and say, oh, that's cancer and give a woman, you know, do a hysterectomy on a woman who actually only had an infection.

So this doctor at Hopkins decided that if he could just grow cervical cancer cells and normal cervical cells in culture, you could look at them under the microscope and establish this is what a cancer cell looks like, this is what, you know, a normal cell looks like. And it would help figure out this diagnosis issue.

So he took samples from her normal tissue and from her tumor, and the normal ones died very quickly in culture. They never really went anywhere. So it was the cancer cells that really took off.

GROSS: Well, it's amazing that they can use cancer cells for medical research since cancer cells are so different from healthy cells. So is that a problem for the research? How can they use cancer cells?

Ms.�SKLOOT: You know, there are things that are completely abnormal about HeLa because they're cancer, but there are a lot of things that cancer cells do that normal cells do. You know, they metabolize. They create energy. They, you know, they get infected by viruses. So there's a lot that you can study that applies to all cells using cancer cells.

The other big thing is that they're used almost like factories. You can infect them with a virus or various other things that you want to produce, and they'll grow those viruses in large quantities.

And they're also sort of they're like a baseline. They're almost treated like the white lab mouse or the fruit fly. Part of why they're so useful is that they just grow in these massive quantities.

GROSS: Henrietta Lacks, her story is so interesting. I love the way you balance the personal story and the science story in your book.

Henrietta Lacks was a poor, African-American woman who, in 1951, when she had cervical cancer, she'd never heard the words biopsy or cervix before. And I was kind of shocked to read a little bit about her medical story.

First of all, at Johns Hopkins University, where she was, she was in the colored ward. There was a colored ward in 1951.

Ms.�SKLOOT: Oh, yeah.

GROSS: And another thing I found kind of shocking was the radiation treatment that she got, and I want you to describe that treatment.

Ms.�SKLOOT: Yeah, the treatment was that was the standard for the day, you know, regardless of where you went for your treatment, pretty much, was that the doctors would take tubes of radioactive material called radium and literally sew the tubes to the surface of the cervix.

They would put them in little pouches. And, first, they would stick a few tubes up inside the cervix, and then they would sew the pouches full of these tubes to the outside, and they would leave them there for a few days, just sort of emitting radioactive material inside of you. And, you know, this is the kind of stuff where it's the radioactive material that glows. It's that kind of radioactive material. And so it would essentially burn off the cancer, and then they would remove the tubes and send you home.

GROSS: Was this a standard procedure then, or was this considered experimental?

Ms.�SKLOOT: Absolutely standard. And this is one of the interesting things, it's sort of an important point in the history of Henrietta Lacks. Her story has often been held up as one of, you know, these sort of, you know, awful, white doctors who did these really kind of vicious treatments to her and stole her cells without telling her because they knew they'd be valuable, and that really wasn't the case at all.

They were taking cervical cancer tissues from any woman who walked into Hopkins with cervical cancer, and this was absolutely the standard treatment. And, in fact, it was considered the sort of top of the line.

But, you know, there are other questions about, you know, this was a colored ward. This was the Jim Crow era. You know, the reason she was at Hopkins in the first place was because she was black, and there were not really many other hospitals around where she could have gotten treated. She also had no money, and Hopkins was a charity hospital. So she was in the public wards. And, you know, there have been plenty of studies that have looked at how segregation affected health care delivery.

So she did get the standard care of the day, but she was definitely sent home -many times after her radiation treatment, she came back complaining of various pains and was sent home and sent home and sent home until she eventually refused to go home and said no, put me in the hospital. And at that point, her cancer had spread so much, and there probably wasn't anything the doctors could have done either way. But, you know, the question of how race played into her health care is a hard one to answer.

GROSS: So you were able to tell this story about Henrietta Lacks, her cancer, her cells, how her cells were used scientifically, in part because you met members of the family.

Once you decided that you were fascinated by the story, you tracked down the Lacks family. Of course, Henrietta Lacks was dead, but her daughter Deborah was alive. So how did you make contact with Deborah, and how old was she when you did?

Ms.�SKLOOT: She was in her early 50s when I finally got in touch with her, and she was very hard to find, and I realized later because she didn't want to be found. But I eventually tracked down a scientist who had her contact information, essentially, and he was the only scientist at that point who had done anything to sort of thank the family for the HeLa cells. He had organized a conference in Henrietta's name.

So he essentially grilled me for about three days over the phone just to find out what my intentions were and to basically see if I was someone he was willing to put in touch with the family.

GROSS: As opposed to what? Were they used to people getting in touch with them for questionable reasons?

Ms.�SKLOOT: Yeah, well, you know, I mean, in the I didn't know it at the time, but I came along in the '90s, and at that point, I was just another of a very long line of essentially of white people coming who wanted something having to do with the cells. So scientists coming saying we want to take samples from you to do research to learn more about the cells, journalists coming and wanting to, you know, essentially tell the same story over and over and over again, this, you know, cells taken from this woman without her knowledge lived all these years, sort of isn't it amazing.

That story had been repeated over and over again in the media. And the reason why it was so upsetting for the family is because no one ever told them anything. You know, the first time the family heard about the cells was 25 years after she died. No one had ever told them these cells had grown, and yet they're all over the world being used in this research. And the way they learned about it was essentially a scientist called them wanting to do research on the family to learn more about the HeLa cells.

This was the very early days of gene mapping, and they thought if they could take some samples from her kids, they could use their genes to study HeLa cells more.

So Henrietta's husband had a third-grade education. He didn't know what a cell was. And he got this phone call one day, and the way he understood it was essentially we've got your wife, she's alive in the laboratory. We've been doing research on her for the last 25 years, and now we have to test your kids to see if they have cancer, which wasn't what the scientist said. But, you know, the scientist said we need to look at your HLA markers and your this and your that, and he had no idea what the science was.

He actually, you know, to him, the only cell he'd ever heard of was, you know, the kind in the jail where one of his sons was at that point. And Deborah was in her 20s, and she had feared her 30th birthday her entire life because she knew her mother died in her 30s, or she was diagnosed at 30, died at 31.

So she knew her mother died right around 30, and she figured the same thing would happen to her. No one had told her why her mom died. So it made perfect sense for doctors to be calling, saying it's time to test you for this thing that killed your mother.

So the scientists came and took samples from the family and left, and the family waited for their cancer results. They would call the Hopkins switchboard and say we need our cancer results, and the, you know, receptionist at Hopkins had no idea what they were talking about, and the scientists were doing research on the cells, and they would then send them to other scientists.

And so the family got sucked into this world of research that they didn't understand, and it was all pretty terrifying for Deborah. She didn't know if this stuff that they were doing hurt her mother. You know, they would say things like we sent this stuff to the moon, and she would think, like, was that okay for her mom? And when they injected them with chemicals and radiation, she was very worried that this was doing something very damaging to her mother's either her mother's spirit or actually her mother might feel the pain of this stuff. So there was a lot of fear surrounding that.

GROSS: So were you in a position to explain to Deborah what this was about once you found out?

Ms.�SKLOOT: Yeah, eventually. I mean, you know, once we once she really did start to talk to me, after about a year, one of the ways in which I was able to kind of finally win her trust was to say, look, I want the same thing you want. I want to find out what happened. I want to tell her story.

You know, Deborah, the one thing I got from our first phone call was that she was desperate to know who her mother was. Deborah was two when her mother died. So she had no memory of her and had spent a lot of her life really fixated on wanting to meet wanting to understand her mother's story and, you know, did she like to dance, and what was her favorite color. And, you know, she just she grew up with a lot of men. She was very badly abused, and she held up her mother as this person who could have saved her.

And so, I knew that she really wanted to know about her mother. So I would go, and as I learned stories about her mother by interviewing distant relatives and finding people she grew up with, I would call and leave messages on Deborah's voicemail saying, you know, hey, I talked to your, you know, cousin Cliff(ph), and he told me this great story about your mom, you know, and they used to do this.

And so eventually, she called me and said okay, fine, I'll talk to you but, you know, only if you don't hide anything from me. And I said hey, you can come with me, if you want, on my research trips. I will share with you everything I learn. I'm, you know, I'm not trying to hide anything from you.

So then, you know, she really did learn about the cells as we were going, you know, as we were doing this research. We'd go into labs, and she would scientists would explain to her, you know, the basics of the cells. So she really did eventually learn about it.

GROSS: My guest is science journalist Rebecca Skloot. Her new book is called "The Immortal Life of Henrietta Lacks." We'll talk more after the break. This is FRESH AIR.

(Soundbite of music)

GROSS: My guest is science journalist Rebecca Skloot. Her new book is called "The Immortal Life of Henrietta Lacks."

Let's get back to Henrietta Lacks, who had a body riddled with cancer, and her cancer cells have been reproduced by scientists, and those cells have been used in so much medical research for decades.

It's quite ironic that the ironic isn't exactly the word. The family didn't find out about this until 25 years later, and the family is in a position where they can't always afford to go to a doctor. Some of them have, correct me if I'm wrong, some of them have health insurance; some of them don't. They've never seen a penny. They've gotten very little recognition for what their mother contributed. Legally are they owed anything now?

Ms.�SKLOOT: Legally? No, in part because it's not clear who would owe them anything. You know, the cells were grown at Hopkins by George Gey, who then gave them to everyone who wanted them for free. He just gave them out because this was this unbelievably exciting development, you know, in research. He was like here, everybody, do great things with these.

And then it was down the road, you know, someone started the first company that, you know, this was the first company to ever sell human tissue or human cells. So somebody started a company selling them because scientists, you know, needed that. And that led to, yeah, multibillion dollar corporations now.

So it's impossible to calculate how much money has been made off of them. But no, historically speaking, there have been other cases where people have found out hey, someone's using my tissues for research, and they've made, you know, in one case, a scientist patented someone's cells and sold the licensed the patent for millions of dollars, and the man sued, and the court said no, people don't have the right to profit off their body because the fear is that it would interfere with science.

GROSS: This might seem a little arcane to people, you know, whether this woman's cells should have been paid for, what kind of acknowledgement she should get. But you point out in your book, we all have cells that are stored someplace. I never really thought of it that way, but is that true, we all have cells that are stored someplace?

Ms.�SKLOOT: Pretty much. It's hard to say everybody does. But yeah, the majority of Americans at this point certainly have, very likely have their tissues on file somewhere.

GROSS: How, like why?

Ms.�SKLOOT: Well, so there are a lot of different ways that this happens, and one of them is through, you know, you go to the doctor, and you get a biopsy. In a lot of cases, you know, you sign a consent form that says the doctor can dispose of this however, you know, he or she sees fit. Some cases it says you can use this for educational research or research purposes. And that basically means they can take them, store them and do whatever they want with them.

And in a lot of cases, so any child born in the U.S. after since the 1960s, it's a law that you have to all newborns have to be tested for genetic diseases. So everybody gets a little, you know, blood prick, and they test you for diseases, which is great. We need that. It's saved a lot of lives. But then a lot of those samples are often saved. So pretty much any child born since the '60s has gotten has their stuff on file somewhere. Circumcision samples are often saved, you know...

GROSS: Where is all this stored?

Ms.�SKLOOT: Oh, there are banks and banks and banks, and there are so many difference places. Some of them are for-profit, some of them are non-profit. Some of them are in hospital basements. The range is really huge. Some of them are just these enormous factories, and the others is, like, some guy's basement, you know, with a bunch of vials in them.

GROSS: And are most of these cells just kind of sitting there, as opposed to being used for research?

Ms.�SKLOOT: We don't really know. A lot of them are being used in research. Some of them probably aren't. This is the thing. It's just this is something that's been sort of building for a long time, and it's only recently scientists are starting to sort of say wow, you know, these fetal blood samples are this incredibly valuable resource. We should create these banks and sort of start maybe being a little more organized about it.

It's interesting, there's actually over Christmas, a lawsuit - there's a lawsuit, actually two of them, one in Texas and one in Minnesota, where some families found out that their children's fetal blood samples had been stored and were being used in research, and they sued the states.

So over Christmas, a court actually ruled in favor of these families in the state of Texas, and the state of Texas had to destroy over 5.3 million samples taken from kids, you know, and stored for research without their knowledge or their parents knowledge.

And that is huge. That's never happened before. No court has ruled in favor of the tissue, you know, quote-unquote, donors in any case like this, and having the result be we're going to destroy all this stuff very sort of quietly.

I mean, literally, I don't very few people even seem to notice that this happened is a bit disturbing, I think, on the larger scale for scientists, right. So one of the big fears and one of the reasons this whole issue of how should we deal with consent and property rights and those things with cells, one of the reasons it hasn't been dealt with for so long is because it's so complicated.

And what my reaction to that Texas thing was, I saw that and thought uh oh, if we start having state-by-state rulings like this, where one state destroys 5.3 million in one part of a state, you know, and state by state we start having these things happen, it's sort of preempting this larger discussion of what to do with the samples and how to do this in a way that isn't going to hurt science but will also protect the people.

GROSS: Meanwhile, getting back to the HeLa cells, the cells that reproduce so well that so many scientists have used for research, the cells from Henrietta Lacks, the He for Henrietta, the La in HeLa from Lacks. These cells are now actually contaminating a lot of experiments. What's going wrong?

Ms.�SKLOOT: Yeah, well, this started in the very essentially in the beginning, and no one knew it. So, you know, when scientists first grew HeLa cells, when George Gey first grew HeLa cells, people thought he had just discovered the recipe and the sort of formula for doing it. And so, everyone started taking samples from themselves and their kids and their patients and really quickly created this huge library of samples, which was being used in all sorts of important research.

And in the '60s, at some point, one scientist basically realized these were pretty much all HeLa cells, and this was an enormous shock to the field. This was a big controversy. It meant potentially, you know, some people were potentially fabricating data, and there was millions of wasted research dollars.

And the thing is that HeLa cells can they can float on air dust particles in the air. They can travel on unwashed hands. You know, if you use a pipette to suck cells out of one dish and put them in another, and then you reuse that, you can transfer HeLa cells other places. And because HeLa cells are so hardy, they will essentially outgrow any cell that they encounter, and the other cell will die because it can't keep up, and HeLa cells take over.

So what, you know, scientists thought they had all of these samples, and it all turned out to be HeLa. And, you know, it started this decades, basically decades-long quest to try and from a few scientists trying to clean up the contamination problem, and it's still happening. I mean, HeLa cells are still contaminating cell lines all over the place.

GROSS: Rebecca Skloot will be back in the second half of the show. Her new book is called "The Immortal Life of Henrietta Lacks." I'm Terry Gross, and this is FRESH AIR.

(Soundbite of music)

TERRY GROSS, host:

This is FRESH AIR. Im Terry Gross, back with science journalist Rebecca Skloot, author of the new book, "The Immortal Life of Henrietta Lacks."

Lacks was a poor African-American woman dying of cervical cancer, when in 1951, her doctor cultured some of her cervical cells and found they kept multiplying in the Petri dish. They were the first human cells to keep multiplying, which is why theyve been used in tens of thousands of research experiments. These cells named HeLa cells, were essential in the development of the first polio vaccine and many medical treatments.

HeLa cells are still being used for research. But the cells were taken from Lacks without her consent or knowledge, and her family didnt even find out until 25 years later. This story had a personal connection for Rebecca Skloot, relating to her father Floyd Skloot, an award-winning writer.

Your father, in 1988, had a viral infection that caused brain damage and it immobilized him. He was in a clinical trial after this viral infection. And since this relates so well to the subject that youve been writing about, except it's much closer to your life history, what was the study that your father was involved in and did he even know he was in a study?

Ms. SKLOOT: Yeah, he did. He volunteered for the study. So he had this - he got this, yes, viral infection that causes brain damage and no one knew what was really wrong with him at that point. There were, you know, it was the late '80s and people were like maybe this is some strange form of AIDS we haven't seen, or maybe its cancer, and they were throwing out all these scary diagnoses. And eventually he got lumped under the umbrella of chronic fatigue syndrome, which was at that point, where they were putting everyone that they couldnt really explain what was wrong with them.

You know, he seems, you know, he can't move. He's got chronic fatigue syndrome. So there was this study that was looking at this particular drug to see if it would help people with quote/unquote "chronic fatigue syndrome." So he enrolled in it and there were a lot of sort of ethical questions about it in the end. And, you know, I was 16. I had just gotten my driver's license and he was unable to drive because of his brain damage, so I would drive him, several times a week, to this hospital where he'd get these infusions of either a placebo or the drug and I would just sort of hang out and watch him and these other patients being used in the study. And at the time, you know, it was this incredible lesson for me as a kid - and I dont even think I realized I was learning it at the time - of like the hope of science and, you know, really thinking this thing was going to fix my dad.

You know, he went from a marathon runner to being this guy who couldnt move -almost overnight. And that was the same year I first learned about the HaLa cells. So I was 16 and in this basic biology class and my teacher, you know, as all biology teachers do at some point, they say oh, these are the first human cells, immortal cells ever grown in culture and they're still alive today even though she died in '51. Like people learn the basics of this in biology. And for some reason my teacher knew her name. He said, you know, her name was Henrietta Lacks and she was black.

And I was like, why do we know that about her? Well, what else? And my first question was: Did she have kids? What did they think about this? You know, do they know about this? And I think that the reason why I asked those questions is because I was in the midst of that myself, and having my own parent used in research and sort of feeling the all the emotions that went along with that. So I, you know, immediately went up after class and asked my teacher: so, you know, what do they know about her? Tell me more. And he was just like, sorry. That's it. That's all there is. And that sort of planted the seed that, you know, all these years later became my book.

GROSS: With your father's story, like watching him from the age of 16 have this mysterious disability that radically transformed his life, and then watching him slowly try to put the pieces back together - to the extent that he was capable of doing that - how did that affect your sense of the vulnerability and the resilience of the human body?

Ms. SKLOOT: Oh, I'm sure it affected it a lot. Probably more than I, you know, than I ever have really thought about. And yeah, and I think part of it is it also gave me a different appreciation for just illness in general and what a transformative experience it can be internally, and sort of emotionally. And he's a very different person now than he was before he got sick. You know, a lot of people say this happens to people often when they go through really, you know, difficult illnesses. And he's a much warmer guy. He's a much happier guy. He realized how important, you know, people in his life are and things. So I think that, more than anything, that's something I got out of it is how transformative it can be to sort of fight through something like that.

You know, and I saw that with Deborah. I mean, you know, Deborah, she was -watching her go through this sort of arch of learning about her mother and the traumas of all of that and then coming out the other side was so inspiring. I mean she was - she, you know, the strongest woman I've ever met in my life. You know, she had no education really and she had a very difficult time reading, so everywhere we'd go she'd carry this little tattered dictionary around with her and look up words that scientists said to try to follow what was going on.

I mean she so badly wanted to learn things that, you know, it was really inspiring to watch. And then, you know, she did come out the other side, eventually, feeling very differently about the cells and really embracing the great things that they did for science. And, you know, so the transformation that trauma can cause is really amazing.

My guest is science journalist Rebecca Skloot. Her new book is called "The Immortal Life of Henrietta Lacks."

We'll talk more after a break.

This is FRESH AIR.

(Soundbite of music)

GROSS: My guest is science journalist Rebecca Skloot. Her new book is called "The Immortal Life of Henrietta Lacks." It's about the first line of human cells to keep multiplying in Petri dishes. These cells, known as HeLa cells, have been used for tens of thousands of experiments. The original cells were taken from the cervical tumor of Henrietta Lacks who died in 1951. The family didnt find out about these cells until 25 years later. Skloot got to know Lacks' daughter, Deborah, while researching the book.

You write in your introduction, that about while you were trying to make sense of the history of cell culture and the ethical debate surrounding the use of human tissues in research, you were accused of conspiracy, slammed into a wall both physically and metaphorically, and that you eventually found yourself on the receiving end of something that looked a lot like an exorcism. So choose the best story from those examples and tell us what happened.

(Soundbite of laughter)

Ms. SKLOOT: There was actually a moment during the research process, and Deborah and I were traveling together and learning various things about the cells, where someone actually performed essentially like a faith healing -laying on of hands - laying hands on her to remove the cells from her. You know, this sort of take the burden of these cells from this woman. Lord, she can't take it anymore. And I was, you know, the reporter sitting in the room with my notebook just sort of scribbling notes going, oh my god, I've never seen anything like this. And, you know, they're screaming and praying and singing and then all of a sudden, you know, he said take these cells from this woman, and he turned to me and he put his hands on either side of my head and said, give them to her.

(Soundbite of laughter)

Ms. SKLOOT: And I just went, oh. You know, as a journalist, this is not something you'd necessarily expect and, you know, I'm not a religious person and I'd never encountered anything like that. And it was such a powerful moment for so many reasons, which I'll leave to people to read in the book. But for me, that was actually the moment when I knew I had to be in the story.

I had been doing all this research for years and, you know, I would come home from these research trips and I would tell my friends and my family these stories and they kept saying, you have got to put this in the book because the family's reaction to you is the thing that tell - that illustrates how really damaged theyve been by this. And how are you going to show this any other way? And I was like no, no, this is not my story. This is their story. I actually have issues with writers who put themselves in books where they dont belong. So I was like no, it is not my story. And I just refused for years. My agent would harass me about it, and then that moment when he said, give them to her, I just went, oh god, I have to be in the book.

You know, and I mean it wasnt like my first reaction, but that I really - I realized in that moment that I had no choice because I had really become essentially a character in the book and that I realized it would sort of be dishonest to leave myself out.

GROSS: So did you or Deborah feel any different after this faith healer?

Ms. SKLOOT: Oh, she was utterly transformed, yeah. It was pretty incredible to watch. And not only was she really released from so much that was so much of the upset, or so much of the anxiety and fear that she was going through, but she was also completely transformed in her relationship towards me. You know, she didnt trust me. Even when she started talking to me, she was terrified that I was going to do something to her. She would have these moments where, for long periods, she was fine, and then she would have moments where she would think, maybe Johns Hopkins sent me and I'm going to take her somewhere and take her cells.

And, you know, she would have these kind of paranoid moments that out of context sounded a little crazy. But when you look at them in the grand scheme of her life and think okay, someone came to her, you know, 25 years after her mother died and said hey, part of your mother is still alive and there's enough of it that if you put her cells in on end they'd wrap around the Earth three times. You know, they'd weigh more than 50 million metric tons. And that was true, you know, and so whats too strange?

Her entire barometer for what sounded possible was just completely off kilter because of the things that were done with the cells. And so she would have these moments of utterly fearing me. I wasnt allowed to ride in her car, so we would go on these trips and take two cars and I would follow her. And after that moment that everything changed in our relationship. She actually - that was the day she first let me get in her car and so I think that...

GROSS: Why, because part of her was now in you?

Ms. SKLOOT: Yeah.

GROSS: In her line?

Ms. SKLOOT: Yeah.

(Soundbite of laughter)

Ms. SKLOOT: Well, right and I had yeah, like part of the cells was in me. And I think also because in that moment, one of the things that, you know, the person who was performing this faith healing - laying on his hands, I guess - one of the things he kept saying is youre not alone in this. She kept saying, I can't take this by myself; I can't do this. And he said, youre not alone and then he did that, you know, sort of transferring the cells to me. And I think part of it was realizing that yeah, I was actually there and in this really long hall with her.

You know, I mean this book took 10 years to write and, you know, I think that was the moment she realized I wasnt going anywhere for real and that, you know, and that I wasnt - that I was maybe, you know, not going to hurt her.

GROSS: So when the cell were quote, "transferred" to you by the faith healer...

Ms. SKLOOT: Mm-hmm. Uh-huh.

GROSS: Did you feel anything transformative?

Ms. SKLOOT: In some ways, yeah. I mean this whole all this religious, you know, the faith and spiritual stuff in the story its pretty heavy. You know, her family really, some members of her family believe that Henrietta's the Lord's first immortal being, you know, chosen and brought back to life as these cells to cure diseases and, you know, and she sometimes causes problems. You know, Deborah always says the whole contamination thing was Henrietta getting back at scientists. She's like, you know, you dont piss Henrietta off. She will sic HeLa cells on you. You know, she'll have them come and destroy your lab.

But all that was very hard for me to kind of wrap my head around initially. I was raised; I have no religious background at all in terms of that stuff. So, but it was transformative. In a lot of ways what - the thing that was building in me, which became even in some cases in some way more powerful right then was the weight of the story, the responsibility that I felt to tell this story, and to get it right. To not, you know, to write it in a way that people will want to read and will get through and all of those things, and to just get it all out of my head and on to the page, I was, I felt such a burden of that.

And in a lot of cases, I was scrambling. You know, Henrietta's generation was in their 80s and 90s as I was doing the research for the book. And in some cases, her, you know, some of her immediate relatives would die right before I was supposed to interview or right after I interviewed them and I always had this sense that I was scrambling to keep up to get this history as it was disappearing. And I - especially after that moment like, there was something about that where I was like okay, this really, I am doing this. I'm writing this book. I must do this right and, you know, do it justice and I would get terrified.

Like, there were moments when I would travel or something where I would think, if something happens to me whats going to happen to this book? Like - and I would call - I have this, one of my best friends is a writer, he's with the Washington Post- and I would call him, sometimes like, middle of the night and say okay, I'm going on a trip. If anything happens to me, my interview transcripts are in this box.

(Soundbite of laughter)

Ms. SKLOOT: My tape recordings are here, and you need to swear to me youre going to write this book. If I die write, this book, you know, and my dad too. Like, and I had assigned them sections. Like, okay dad, you write this part. You know, my friend's Mike. Mike, you write this part and you guys have to swear to me youre going to do this. And I like, I had that kind of, you know, sort of...

(Soundbite of laughter)

GROSS: So youre kind of amazed that you survive and the book is published.

Ms. SKLOOT: Yeah, in a lot of ways. And I was also terrified something would happen to the research materials. My poor boyfriend had to move these boxes. Every time we moved or traveled anywhere I brought my research with me because I thought, I was afraid something was going happen. So I would go to this house in the middle of nowhere to work on it sometimes and my boyfriend - we couldnt mail the boxes because I was scared something would happen to them. I would let the movers touch them. And so my boyfriend would lug, you know, and this was pre-digital, so we're talking, you know, file cabinets full of folders and books and books and tapes. And we would pack them all into this car and then we couldnt leave it. I mean I was so protective of this stuff. And really a lot of it, I mean I had always felt really that it was so important to tell the story, but something about that moment with that faith healing, it became a...

(Soundbite of laughter)

Ms. SKLOOT: Yeah, it became much bigger than me, I think.

GROSS: Since you raised so many ethical questions about medical research in the story and informed consent, were there any ethical questions that entered into your relationship with Henrietta Lacks' daughter Deborah?

Ms. SKLOOT: Oh, absolutely. And in a lot of ways, I think this book is just as much about journalism, you know, and the ethics of telling people's stories as it is about science. You know, they're so many questions about, you know, do you - who has the right to tell your story and do you own your own story? And, you know, they're a lot of questions about that. You know, one of the first questions that - once Deborah's family agreed to talk to me - the first question that they asked was: What are you going to pay us? You know, here you are yet another white person who showed up at our house wanting to do something that you are going to eventually profit off of that we might get nothing out of.

You know, at the time I was in my 20s. I was paying for all my research using student loans and credit cards and I was like, I dont even know if this thing's ever going to get published. And, you know, but I said to them, you know - and there is a code of ethics in journalism that says, you know, you dont pay people for their stories. It changes the relationship. It becomes a business partnership, not a sort of journalistic endeavor. And I felt like, you know, I felt like I couldnt pay them for their story. But at the same time, I didnt want to be another person who just sort of came along, got stuff from them and left.

So what I told them in the beginning is if, you know, this thing ever actually happens, I'm going to create a foundation, a Henrietta Lacks Foundation that has a scholarship fund and I will put some of my money into the scholarship fund from the book and it will be open for any scientist, you know, university, corporation, you know, anybody in the world can donate to this thing and it would be a scholarship fund that would help send, essentially educate any of the descendants of Henrietta Lacks and, you know, others in similar situations. So, you know, when I said this I had no idea what I was getting myself into. I didnt know how you'd create a foundation or a scholarship fund, but I did. I did it. And so the foundation actually just went live.

And my hope is that, you know, and Deborah was, this was something that was very important to Deborah. She came to realize as were going through this whole book process that one of the biggest problems within the story was that she didnt have an education. So she came to a point where she realized if she had just been able to, you know, ask the right questions to the scientists and if she had had a little more exposure to science - even on a basic level - she might not have been so scared and the stuff might have not been so traumatic for her. And she might have just been able to say at some point hey, wait a minute, this isn't clear to me, you know, and just to sort of be comfortable questioning things a bit more.

So for her, one of the big important elements of this is, you know, she wants the future Lacks generations to be educated. She does not want them to go through what she went through. You know, carrying her dictionary around trying to understand something so scary to her, and so I felt like that was what I could do for that. But then, you know, there were a lot of other ethical issues that I sort of grabble with in the book, about telling the story. And in the end that's why I'm in it, because I felt like if I wasnt then that would be journalistically unethical, in a sense.

I felt like I had to show the impact I had on this family, which, you know, I put them in some really hard situations that had some pretty bad effects on Deborah in the moment. I think in the end it was all good for her. But, you know, there were some pretty bad things happened, and so I felt like that all had to be in there as, sort of just to be upfront about what was going on in the story and my role in it.

GROSS: Rebecca Skloot, thank you so much for talking with us.

Ms. SKLOOT: Thank you so much for having me.

GROSS: Rebecca Skloot's new book is called "The Immortal Life of Henrietta Lacks." You can read an excerpt on our Web site, freshair.npr.org.

Coming up, rock historian Ed Ward tells the story of the band with the worst luck in American rock history.

This is FRESH AIR.

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